"Can you remember what you were doing when you were 17? I've missed out on the best years of my life..."

Former Wentworth High School pupil, Emily James from Eccles, was diagnosed with Ehlers Danlos Syndrome, or EDS, when she was 11. EDS is a rare genetic condition that seen Emily, now 17, go through horrific health experiences to the point where UK specialists have given up. But her family haven't and are raising funds for Emily to see a specialist in America...

17 year old Emily James, from Eccles, was diagnosed with Ehlers Danlos Syndrome, or EDS, when she was 11 and has suffered ever since with various horrific health experiences. Now UK specialists have almost given up on her but the family have found a consultant in America who might be able to help.

A Go Fund Me page called Emily's Life has been set up to raise funds for her to get to the States, while Emily herself has written a very brave and honest letter to people who might be able to donate. Here we re-print it with a link to the Go Fund Me page below...

"Hi my name is Emily James. I'm 17 years old. I was a pupil at Wentworth High School. I was diagnosed with ehlers danlos when I was 11. This has taken me on many journeys with a lot of emotional up and downs. Ehlers danlos is a rare genetic condition that's not only life threatening but very limiting and extremely disabling. I've now been a wheelchair user since the age of 11. Ehlers danlos has caused me lots of pain and big problems, from my shoulders first dislocating, to my knees, wrists, fingers, elbows and hips to my biggest problem being my jaw. That started one evening 3 years ago when I made my first trip to A&E to have my jaw relocated.

"Unfortunately it wasn't as simple as that. I then needed lots of surgery on my jaw, which all failed. That brought me to one of my biggest operations. They had to take bone out of my hip and put in my jaw to stop it from dislocating, but it only lasted about 3 months. I had to go back to theatre to have my bone graft reversed, which was extremely upsetting. But, it was a big worry as I had always ended in ICU because of problems with my chest;, at the last count I've had pneumonia 17 times.

"I went into theatre, in 2013, as a day case and ended up an inpatient for a whole year. I ended up with lots of worrying problems. My swallowing had become a big problem and now wasn't safe because my muscles had become floppy, so it was unsafe for me to eat and drink safely. I needed a gastrostomy, so off I went back to theatre. But, they also said I needed a fundoplication because of severe reflux. So another 9 hour op and back to ICU and another bout of pneumonia. That was back in September 2013. But my jaw still wasn't any different and was still dislocating.

"I struggled with my chest for months, I was given so many antibiotics that I've become immune to them, which again is a massive concern. But in October the same year I took a turn for the worse. One Sunday night things changed and all of a sudden I was unable to breathe properly! They had to do a crash call, my mum was beside herself. There was so many doctors, I was scared. My voice box had gone into spasms; it couldn't work properly anymore as my muscles in my vocal cords had become weak. My mum got told to call my dad and other members of my family as they didn't know if they could save me. That was the most heartbreaking time of my family's life, that night we will never forget. The only way to keep me safe was to have a tracheostomy to keep my airway safe and open.

"We are now still to this very day having problems. I've been in hospital again for almost 6 months with massive problems with my jaw. But this time the maxfax consultants are saying they can do no more for me. My family are not giving up. We have found a doctor in America who understands EDS, he's also maxfax. We are desperate to meet with this man. So my wonderful family and friends have started a gofundme page called Emily's Life; they have been doing lots to raise money for me to get the help I so desperately need.

"We had a fundraising night recently where my wonderful cousin shaved her hair, £2,577 was raised with help from her friends and my family. I'm so desperate to get on with my life, instead of constantly being in hospital.

"Can you remember what you were doing when you were 17? I've missed out on the best years of my life. I now need oxygen every night and recently throughout the day too. Please, if you could just find it in your hearts to help me by donating to Emily Life gofundme. Every single penny will make a difference and mean more to me than you could ever know."

Hi Emily, hope you are doing relatively Ok. My 17 yo son connor has recently been diagnosed with eds hypermobility he has lots of problem with his hips, knees and ankles atm and is just getting worse. He was diagnosed after our old gp thought him and his brother had marinas which is similar. Well the main reason I'm commenting is to see how you got on with your gp. Our gp doesn't have any knowledge od eds so he isn't getting the support he needs and currently wer looking for a gp in he local area eg salford/Eccles ( we live in weaste) that has knowledge and can treat him the way he should be instead of just bein unhelpful and dismissive of his syptoms.thank you in advance for any advice you can give us as atm we don't know where to turn.

Katherine wroteat 06:03:27 on 15 June 2015

Have you tried Stanmore at RNOH? They have a residential course especially for rehabilitation of people with EDS. It's NHS based and has made a huge difference for a lot of people.
There are also local support groups where you can access information and help.
Kath